Hostname: page-component-8448b6f56d-jr42d Total loading time: 0 Render date: 2024-04-25T05:48:27.542Z Has data issue: false hasContentIssue false
  • English
  • Français

What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Published online by Cambridge University Press:  06 March 2020

Kristian Pollock Open the ORCID record for Kristian Pollock [Opens in a new window] ,
Samantha Wilkinson ,
Lucy Perry-Young ,
Nicola Turner Open the ORCID record for Nicola Turner [Opens in a new window]  and
Justine Schneider
Kristian Pollock*
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK
Samantha Wilkinson
Affiliation:
School of Childhood, Youth and Education Studies, Manchester Metropolitan University, Manchester, UK
Lucy Perry-Young
Affiliation:
Department of Allied Health Professions, Sheffield Hallam University, Sheffield, UK
Nicola Turner
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK
Justine Schneider
Affiliation:
School of Health Sciences, University of Nottingham, Nottingham, UK School of Sociology and Social Policy, University of Nottingham, Nottingham, UK
*
*Corresponding author. Email: kristian.pollock@nottingham.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

Keywords

home caredementiaqualitativefamily care-givers
Type
Article
Information
Ageing & Society , Volume 41 , Issue 9 , September 2021 , pp. 2060 - 2073
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adelman, R, Tmanova, L, Delgado, D, Dion, S and Lachs, M (2014) Caregiver burden: a clinical review. JAMA: The Journal of the American Medical Association 12, 1052–1062.CrossRefGoogle Scholar
Age, UK (2017) Briefing: Health and Care of Older People in England 2017. London: Age UK.Google Scholar
Alzheimer's Society (2012) My Life Until the End: Dying Well with Dementia. London: Alzheimer's Society.Google Scholar
Alzheimer's Society (2016) Fix Dementia Care: Homecare. London: Alzheimer's Society.Google Scholar
Aronson, J (2002) Elderly people's accounts of home care rationing: missing voices in long-term care policy debates. Ageing & Society 22, 399–418.CrossRefGoogle ScholarPubMed
Baxter, K and Glendinning, C (2014) People Who Fund Their Own Social Care. London: National Institute for Health Research School for Social Care Research.Google Scholar
Bazeley, P and Jackson, K (2013) Qualitative Data Analysis with NVIVO. Los Angeles, CA: Sage.Google Scholar
Borgstrom, E and Walter, T (2015) Choice and compassion at the end of life: a critical analysis of recent English policy discourse. Social Science and Medicine 136, 99–105.CrossRefGoogle Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.CrossRefGoogle Scholar
Bunn, F, Goodman, C, Pinkney, E and Drennan, VM (2016) Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis. Health and Social Care in the Community 24, 48–67.CrossRefGoogle Scholar
Burton, M (2006) Grounding constructions of carers: exploring the experiences of carers through a grounded approach. International Journal of Social Work 38, 493–506.Google Scholar
Charmaz, K (2006) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. London: Sage.Google Scholar
Daly, M and Westwood, S (2018) Asset-based approaches, older people and social care: an analysis and critique. Ageing & Society 38, 1087–1099.CrossRefGoogle Scholar
de Sao Jose, J, Barros, R, Samitca, S and Teixeira, A (2016) Older persons’ experiences and perspectives of receiving social care: a systematic review of the qualitative literature. Health and Social Care in the Community 24, 1–11.CrossRefGoogle ScholarPubMed
Dyck, I, Kontos, P, Angus, J and McKeever, P (2005) The home as a site for long-term care: meanings and management of bodies and spaces. Health and Place 11, 173–185.CrossRefGoogle ScholarPubMed
Fraser, K, Archibald, M and Nissen, C (2014) Uncovering the meaning of home care using an arts-based and qualitative approach. Canadian Journal on Aging 33, 246–258.CrossRefGoogle ScholarPubMed
Hengelaar, A, van Hartingsveldt, M, Wittenberg, Y, van Etten-Jamaludin, F, Kwekkeboom, R and Satink, T (2018) Exploring the collaboration between formal and informal care from the professional perspective. Health and Social Care in the Community 26, 474–485.CrossRefGoogle Scholar
Ho, A (2008) Relational autonomy or undue pressure? Family's role in medical decision-making. Scandinavian Journal of Caring Sciences 22, 128–135.CrossRefGoogle ScholarPubMed
Humphries, R, Thorlby, R, Holder, H, Hall, P and Charles, A (2016) Social Care for Older People: Home Truths. London: King's Fund.Google Scholar
Institute of Public Care (2011) People Who Pay for Care: Quantitative and Qualitative Analysis of Self-funders in the Social Care Market. London: Institute of Public Care.Google Scholar
Koehler, I (2017) Paying for It: The Human Cost of Cut-price Care. London: Local Government Information Unit.Google Scholar
Lolich, L (2019) The prioritisation of choice in eldercare: the case of Ireland. International Journal of Care and Caring 3, 1–14.CrossRefGoogle Scholar
Manthorpe, J, Harris, J, Samsi, K and Moriarty, J (2016) Doing, being and becoming a valued care worker: user and family carer views. Ethics and Social Welfare 11, 79–91.CrossRefGoogle Scholar
Milligan, C, Turner, M, Blake, S, Brearley, S, Seamark, D, Thomas, C, Wang, X and Payne, S (2016) Unpacking the impact of older adults’ home death on family care-givers’ experiences of home. Health and Place 38, 103–111.CrossRefGoogle ScholarPubMed
National Institute for Health and Care Excellence (2015) Costing Statement: Home Care. Implementing the NICE Guideline on Home Care: Delivering Personal Care and Practical Support to Older People Living in Their Own Homes (NG21). London: National Institute for Health and Care Excellence.Google Scholar
Ohwaki, K, Hashimoto, H, Sato, M, Tamiya, N and Yano, EM (2009) Predictors of continuity in home care for the elderly under public long-term care insurance in Japan. Aging Clinical and Experiemental Research 21, 323–328.CrossRefGoogle ScholarPubMed
Oliveira, D, Vass, C and Aubeeluck, A (2017) Quality of life on the views of older family carers of people with dementia. Dementia 18, 990–1009.CrossRefGoogle ScholarPubMed
Pot, AM, Zarit, SH, Twisk, JWR and Townsend, AL (2005) Transition in caregivers’ use of paid home help: associations with stress appraisals and well-being. Psychology and Aging 20, 211–219.CrossRefGoogle Scholar
Ribbens McCarthy, J (2012) The powerful relational language of ‘family’: togetherness, belonging and personhood. Sociological Review 60, 68–90.CrossRefGoogle Scholar
Schneider, J, Kavanagh, S, Knapp, M, Beecham, J and Netten, A (1993) Elderly people with advanced cognitive impairment in England: resource use and costs. Ageing & Society 13, 27–50.CrossRefGoogle Scholar
Sims-Gould, J and Martin-Matthews, A (2008) Themes in family care-giving: implications for social work practice with older adults. British Journal of Social Work 38, 1572–1587.CrossRefGoogle Scholar
Smebye, KL, Kirkevold, M and Engedal, K (2016) Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study. BMC Health Services Research 16, 21.CrossRefGoogle Scholar
Taylor, BJ and Donnelly, M (2006) Risks to home care workers: professional perspectives. Health, Risk and Society 8, 239–256.CrossRefGoogle Scholar
Turner, N, Schneider, J, Pollock, K, Travers, C, Perry-Young, L and Wilkinson, S (2018) ‘Going the extra mile’ for older people with dementia: exploring the voluntary labour of homecare workers. Dementia, doi:10.1177/1471301218817616.Google ScholarPubMed
UNISON (2016) Suffering Alone at Home: A UNISON Report on the Lack of Time in Our Homecare System. London: UNISON.Google Scholar
Walshe, K and Shutes, I (2013) Care relationships, quality of care and migrant workers caring for older people. Ageing & Society 33, 393–420.CrossRefGoogle Scholar
Wiles, J (2003) Informal caregivers’ experiences of formal support in a changing context. Health and Social Care in the Community 11, 189–207.CrossRefGoogle Scholar
Wittenberg, Y, Kwekkeboom, R, Staaks, J, Verhoeff, A and de Boer, A (2018) Informal caregivers’ views on the division of responsibilities between themselves and professionals: a scoping review. Health and Social Care in the Community 26, e460–e473.CrossRefGoogle ScholarPubMed